Comments (5)

You want to reach out to Kristen - she is the resident expert in this area. Her son has Hererotaxy and she has spent a ton of time researching it, finding the best doctors & treatments and helping other families with similar diagnosis.

My daughter is dxd with DORV. We are about three weeks post OP on her BT shunt placement. (1st surgery). We are still in the hospital. She is almost a month old. She has been a slow healer, but has also been a steady one too. Its been a roller coaster, but i know she will be just fine.

Congratulations on your baby! I know this is a scary time, but there are resources available. Do speak with Kristen, she is a fantastic resource. Also, be sure to talk to Boston Children's Hospital if you haven't already.

Thanks, I've actually already joined Kristen's fb page so that was a great place to start. Everyone keeps recommending Boston and CHAP- Philadelphia, PA. I understand they are the best in their field but we don't see how we could manage that logistically and financially. Only time will tell. Our local doc's seem confident at this point. Since this is so new, I still have lots to ask them in order to be as confident as they are. Has anyone NOT had their surgeries at Boston or CHAP that have had any success? Or is this not an option, and something that we just need to make happen no matter what??

Please don't feel that you HAVE to go anywhere you are not comfortable or financially/logistically able to go. Unfortunately, I had a very bad experience using social networking to get info when I was pregnant. I carried twins, one had an HRHS/Heterotaxy dx. When I did seek the help of other moms, some made it quite clear that they disagreed with my decision to stay in my hometown & have my baby be treated here. In fact, some were downright mean about it & really said hurtful things. A Facebook post pretty much spiraled out of control on my part (I became very defensive) & theirs. Anyway, although I know Boston is known to be experts in Heterotaxy, etc., don't be made to feel your situation is hopeless or you are less of mom because you are not able to go there. I believe some moms can actually get doctors from there to review your baby's info for a phone consult, but they can tell you more.

And don't let what I said above stop you from seeking help from others online. The Heterotaxy page on FB is great & I did meet some wonderful moms who I am still friends with now. It's very supportive. Just don't let anyone make you feel bad, this is a hard enough time for you.